How we manage your data

Clinics are required by law to collect personal details of patients and donors involved in treatment and to submit this information to us. Find out more about the information we hold, how it’s used anonymously and how researchers can use your identifying information with your consent.

What information do you hold about me?

In the course of treatment, storage or donation, licensed clinics are required by law to collect information about patients, their partners and donors. Some of this information is forwarded to us and held securely on our database.

This information includes:

your name

your date of birth

your place of birth

the number of embryos transferred in treatment

whether your treatment led to a pregnancy

the weight and date of birth of any babies born

whether you had a multiple pregnancy.

Key facts

Researchers are allowed to request identifying information from us

They can only use information that would identify you with your consent

How is my information used?

Anyone can access anonymous information (information that cannot reveal your identity) about the different fertility treatments that are being carried out and the outcome of those treatments.

This information is extremely helpful to medical professionals, researchers, journalists, students and many others who are trying to understand more about issues surrounding fertility. You don’t need to give your consent to your anonymous information being shared.

Identifiable data

If researchers want to use information that identifies individual donors or people having treatment, either with their own eggs, sperm and embryos or with donated eggs, sperm or embryos then you need to give your consent for this unless you had treatment with your own eggs, sperm and embryos between August 1991 and 1 October 2009 (see more below).

Identifying information is a very valuable resource for researchers and could be used to carry out medical and social research. It could, for example, be used to investigate the safety and efficacy of fertility treatments, develop new treatment and storage techniques and study the effect of national policies, such as the HFEA multiple births policy. It can also be used to link fertility treatment data with other healthcare records for example, to see whether IVF affects the health of women or their children.

Identifying information we collect about you includes:

name (current and previous names)

date of birth

place of birth

country of birth

NHS number.

Identifying information we collect about any children born from your treatment includes:

Will my personal information be published in a research project’s findings?

I had treatment between August 1991 and 1 October 2009, what do I need to know?

Since 1 October 2009, under new legislation, researchers have been able to apply to access identifying information for patients involved in treatment between August 1991 and September 2009 (and any children born as a result of treatment) without getting their consent. This does not apply to donors or those receiving donated eggs, sperm or embryos.

If I agree to being contacted in the future for research purposes, what does this involve?

In some cases, researchers need direct contact with patients in order to carry out their research – this is called contact research. Your participation could involve completing a short questionnaire, or it could require more extensive involvement, such as a long-term study which involves regular contact with researchers.

If you agree to participating in this kind of research, staff from your clinic will get in touch with you when there’s a new study and you can choose whether or not to take part. You’re free to withdraw your consent at any point up until your information is used in the study.

What kind of research projects are currently being conducted?

Two of the largest studies that have been run examine whether there is a link between fertility treatment and cancer in women and children. These simply wouldn’t have been possible without using identifying information.